Being a parent is a massive compromise.
Even for those parents who were absolutely made to do it, who love and relish every given moment, there are inevitably compromises, right? It’s just that some people mind compromising less, or perhaps they naturally find the compromises less compromising? For some, parenting makes them feel complete; it’s who they were always meant to be, their ultimate goal in life; content.
However, parenting isn’t for everyone; and I have tonnes of admiration for anyone who realises this (preferably before having children) and chooses not to be a parent. This decision is far more brave and less selfish than having kids because it’s what you feel you’re supposed to do, or because ‘everyone else is doing it’. Having children is, of course, a life choice as any other; career, relationships, geographical location etc but I do think there’s an ‘expectation’ culturally that it’s the ‘norm’ and is what ‘should be done’ and frankly, that worries me.
I think there’s a big problem with society and the pressure it puts on people to procreate; to get married, be monogamous, buy houses and all the other ‘cultural norms’. In my opinion, it’s a recipe for disaster; especially nowadays when we should be encouraged and empowered to follow the life we want and be who we really are.
For me, parenting is a huge compromise. Parenting a child with additional needs, even more so. Not because being a parent requires sacrifice, or not always being able to do what you want (if you truly want to be a parent, then I’m afraid you need to accept that from the outset) but because parenting Martha in particular, makes it impossible to be the parent I want to be. The parent I thought I would be.
Parenting a child like Martha requires a huge quantity of tolerance and patience – neither of which I am naturally blessed with. As a mother, I’ve always been quite strict. With Elke, for example, I’ve never stood for rudeness, swearing, bad manners or rule-breaking. Boundaries are in place, she knows what they are and she’s aware of the repercussions should she choose to ignore them. With Martha, I’ve had to completely re-learn what those are and to remove my own learned expectations, in order that I can understand her better, and save myself from going completely mad.
There is a great deal of compromise, not just for me, but for everyone involved in Martha’s life. A great deal of ‘unfairness’ too (or at least, what we perceive to be unfair -which is often related to our expectations, which we must learn to modify according to our circumstance – a whole other conversation perhaps) which can be difficult to deal with – especially when you’re ordinarily a bit of a perfectionist (who, me?).
I’ve had to (try) park that part of myself and learn to gradually ‘let it go’ along the way. Not entirely of course, it’s a part of who I am and I’ll never be satisfied if certain things aren’t done the right way (according to me!). But I’ve had no choice than to get used to the fact that my home is never going to be ‘perfect’ despite it being one of the things I love the most. Believe me, it’s a tricky dynamic loving interiors and vintage collectables when you live with an impulsive ‘thrower’! Greasy hand prints on walls only painted a week ago; whole cups of coffee flung down the stairs when we didn’t quite have our eye on the ball; holes in walls and stains on carpets – stuff that I simply don’t have the time or money to constantly keep on top of.
I can’t count the number of favourite vases, bowls or ceramic ornaments that have been lost to an anxious outburst. There’s been many a tear shed over a special gift or family heirloom. Recently, I’ve had to box up most of my favourites or anything of any emotional or financial value and put them away in the attic, unsure of whether they’ll ever see the light of day again. For some things, it’s just not worth the stress. However, I’ll never completely compromise. I still love my home and having nice things around me – I don’t want to live in an empty box. I just have to be careful about where I place certain things and be more selective about what I have on display. I’ve also become hardened to the pain of losing things over time and it doesn’t have quite the same emotional effect on me that it used to. It’s kind of my fault if something get’s broken because I knew the risks and chose to take them. Tit.
I’m super-conscious that when I relay some of the really bad stuff that’s happened or the seemingly awful things Martha has done, it may seem like I’m vilifying her; I’m absolutely not – and I never want anyone to think badly of her. I share this with you because it’s a very real part of our lives, (and the lives of many others) and I think it’s important to be honest and to have integrity. No matter what she does, we understand that it’s not something she wants or chooses to do, but a part of who she is and a reflection of the things she struggles to cope with. We do our best each day to learn and understand more about her and her behaviours; how we can help her to overcome her anxieties and find coping mechanisms to help her deal with the daily difficulties of life. We adore her; and although it may seem that we’re painting her in a negative light, please know this is not the case. It’s not to say things are easy, they are not, however it’s all in the context of our situation and we do not blame her.
I don’t see the bad stuff that happens as a ‘look at how difficult life is for me’, rather, I see it as ‘look how difficult life can be for my daughter’. I remind myself often, that if this situation, or any other feels challenging for me, how on earth must that feel for her? She doesn’t choose to feel or react that way – who would?
But, the reality is, the claustrophobia of living a life like mine can sometimes become overwhelming. The limitations it puts on life mean I often feel trapped in my own situation. It’s difficult to explain to someone who doesn’t live it day in, day out.
For someone who’s always been what others might describe as outgoing, friendly and sociable, I have, at times, found myself becoming more recluse; avoiding social situations because they often seem just too much like hard work. I’ve had moments in recent months where I haven’t always felt as though there was anything to look forward to. And I often panic that my hopes of quality time with Elke before she becomes an adult, are slipping away. I just want to take my daughter shopping, or out for tea or to the cinema – the things that other parents take entirely for granted and that I look on at with jealousy and resentment. Is that too much to ask?
I read an article recently that talked about feeling as though you’ve ‘lost the life that was meant for you’, the sense that you’re living someone else’s life and looking on – almost like an out of body experience. It really resonated with me, but it went on to say that you must reach a place of acceptance about that in order to be able to move on and lead a happy life. I’ve been trying to do that for years but recently reached a place where I found that more difficult to accept, rather than easier.
I think one of the reasons for that is because the ‘system’ has promised us so much. We’d been given hope that hadn’t materialised and that made us feel worse. Without the promise of help and support, the premise that things might get better and that someone might do something to actually help you, maybe it’s possible to reach that place of acceptance but my life right now is filled with days of phone calls, meetings, paperwork, zoom calls, email trails, stuff that constantly needs sorting out. It’s a lot of work – I’ve said before it’s pretty much another full time job. But with that comes the promise of better times which is supposed to make it worthwhile. The dangling carrot. The pot of gold at the end of the rainbow. It’s just that so far, there’s been no carrot or gold. There’s no evidence that the promised better times are coming.
That is exhausting. Like running a marathon with no medal or sense of personal achievement at the end. What’s the point of that?
We had a really difficult few months towards the end of last year. We’ve been working with CAMHS (child and adolescent mental health services) who overall, have been very helpful and started bringing together some ‘bigger picture’ stuff to help us get to the bottom of what’s going on with Martha. I’ve always known she is more complex than an ‘Autism’ diagnosis and we’re starting to make some headway with that. A number of professionals have been working with her to assess her needs, including an Occupational Therapist, a Speech and Language Therapist and an Educational Psychologist. It’s been recognised that although deceptive in her conversation skills, Martha is still only able to process 1-2 pieces of information at any one time. This might be words, instructions or even sounds. There’s also a delay in the time it takes her to process such things, so even if she may appear to have understood what you have said to her – it could be minutes, hours or even days later when she actually processes it. This can have a huge effect on everything. Those anxious outbursts that appear to be from nowhere (as nothing specific has happened at that exact moment) may actually be because she’s just processed something that happened 24 hrs earlier.
Wow. Well, that changes things a bit.
Through this work she’s also received an informal diagnosis of a ‘significant learning difficulty’. Again, this changes everything. I’ve said before that I’m absolutely not interested in labels for label’s sake, however what I hadn’t realised, was the importance of having an accurate diagnosis so that both we, and the professionals who work with Martha, can provide the appropriate support she requires to be successful – and more importantly, happy (which equates to success in my eyes!). It’s also massively important to ensure she is recognised by the support systems she will need in place for her future – whether that be physical, financial or otherwise.
If you think about a diagnosis of Autism – what does that actually mean, to a professional or anyone else? I hear it all the time from people you meet or speak to, or who relate to something I write about. Everybody knows someone who has autism, or someone who knows someone who has autism, but as we all know, the spectrum is vast. It includes individuals who can lead perfectly happy and independent lives, to those who are completely unable to function in the ‘real world’ and who will never be able to live without round the clock support. I’d never really considered this. Although I do sometimes get frustrated when people believe they can relate or understand when their situation is not comparable. But that’s not their fault, it’s mine. It’s mine for not realising sooner the importance of getting right to the bottom of Martha’s needs; of distinguishing what makes life more difficult for her than for another autistic person for example. Martha’s needs are complex.
We believe she also has ADHD, (we’re on one of those endless waiting lists for assessment *rolls eyes). I’ve just always assumed this to be the case and as long as I understood that, that would be enough to give Martha what she needs. What I hadn’t factored in was that unless she is formally given an ADHD diagnosis, then the system will not be able to give her what she needs. The level of support she can receive (especially as she reaches adulthood) is significantly different depending on her specific diagnosis’. Adult support options increase with a diagnosis of ADHD, hand in hand with financial help and access to appropriate medication. So unless we pursue these now, we’ll be doing her a huge disservice in the future.
The Summer holidays are always a difficult time for us. For any parent, it can be a challenging time and in particular for parents of children with additional needs. It’s hard bloody work. All children generally prefer routine and boundaries but for those with autism and anxiety-related issues, this is just a huge, confusing, boundary-less spanner in the works; and they can’t understand it.
Martha’s anxiety escalated throughout the summer holidays to a point where her outbursts and physical aggression reached an all-time high. She’d started lashing out at me in the car when I was driving, which had never happened before.
Going for a drive was something we would ordinarily do to regulate her. No matter the weather, we could always go for a drive. It’s something we had done a lot of during lockdown to alleviate the boredom and manage her need for routine. She finds listening to music in the car generally calming too. Occasionally, we’d go to a drive-through as a treat, to break up the journey and because its far easier to navigate than going to a busy cafe, where any manner of things could happen (spilled drinks, thrown cutlery, sensory-processing meltdown’s due to noise / lighting etc). However even this had become stressful and I didn’t know how she was going to behave or whether she’d lash out at me, out of the blue.
It hadn’t helped matters that at the beginning of the holidays, Martha had been allocated a place at a centre for children with communication issues and challenging behaviours, with a staff ratio of 3:1, for 3 hrs on a Saturday morning. This had been deemed suitable due to the high staff to child ratio and as an opportunity for Martha to develop her communication skills and strategies for managing her emotions and behaviours as well as giving us a bit of respite to spend time with Elke on a Saturday morning. Unfortunately on her first settling in session, the member of staff looking after Martha hadn’t quite taken me seriously when I had asked him not to let go of her hands around other children and within 5 minutes she had attacked two of them in the face. What a f******* disaster. We had failed her yet again. We put her in an environment where she was bound to fail and the repercussions of that lasted the whole summer, leading to a number of serious incidents.
We tried to attend the setting twice more after we’d been assured by staff that they weren’t phased by this behaviour and now they knew what to expect (despite our actually telling them that in no uncertain terms from the outset) wouldn’t allow it to happen again. On both occasions, her anxiety, even before arriving, was through the roof with her lashing out at myself and her dad, and unfortunately it was agreed that it was, unsurprisingly, not an appropriate environment for her. It turns out that the staff ratio was 3 children to 1 adult – not the other way around. Quite a different provision. How did they get that so wrong?
You can’t underestimate the longevity the effects of an experience like this can have on Martha. It’s like a recurring nightmare for her and as she becomes more aware of her own actions, coupled with the fact she knows she is unable to control them, her anxiety around other people becomes unmanageable. She doesn’t want to be in a position where she knows she cannot prevent what will happen. It’s horrible seeing any child hurt; horrifying when it’s at the hands of your own child, but what’s truly harrowing, is watching your own child suffer as they process what they’ve done, witnessing the remorse washing over them, knowing they’ve really hurt someone but that it’s out of their control. So every time they find themselves in a similar situation, the anxiety they might do it again and not be able to control that, becomes overwhelming.
It’s very hard to provide consistent routine through the holidays despite knowing how important it is, especially when as parents, we live separate lives. The girls spent one week with their Dad, then two weeks with me which was then repeated. During this time, Karl was working away at festivals, so most of that time I was alone with the girls. Even though I tried my best to keep things as routined and low key as possible, I have another child to consider; and she wanted a friend to sleep over – not a big ask really, is it? But actually, that can be quite tricky. It’s a change at home; another (new) person, new voices, more movement etc. Martha can be unsettled by this. She also wants to ask that person a thousand questions which can be tiring for anyone. Add to this that she’s also unpredictable and may go into a room and throw something at Elke and her friends; it’s quite a tricky dynamic to manage and takes some pretty understanding friends, who know Martha and what she can be like.
One friend had been with us for a few hours and was clearly tiring of Martha. Elke came to me and said that her friend had offered for them to go to her house to sleep instead of staying at ours. A strange change of heart I thought, given they were here and settling down for the night. And then I realised, that it was because of Martha. She was finding it too much and probably thought they wouldn’t get any peace. I felt sorry for Elke. She’d wanted to have a friend to sleep at her house for a change. She didn’t want to be the one always sleeping at other friends’ houses and never returning the favour. She wanted to have her own things around her sometimes and be able to share them with friends. I asked Elke if she thought it was because of Martha and she hesitated before saying, yes, she thought it was. She looked sad (and I felt sad too although I didn’t want to tell her that) but I said that if that if that’s what they preferred, then of course they could go. My heart sank when the girls’ mum came to pick them up. I’d really tried to be a good mum to both girls and make it as much a success as possible, but so much of that it is out of my hands. This is the part which feels most claustrophobic I think; you want to do things but can’t, and you can’t control / change that either – a bit like Martha and her physical impulses I suppose
I want to do things I can’t. She doesn’t want to do things but can’t stop herself. There’s a huge amount of frustration and sadness relating to both those things which is hard to articulate to people who don’t experience them. I hope I’ve made some sense of it for you in that little anecdote?
At the end of this tricky 5 weeks or so, we’d booked to go visit my family on the Isle of Man who we hadn’t seen since the start of the pandemic. It had been 20 months without a hug from Mum & Dad, my three sisters and extended families, and we were all very keen to get over to see them. Obviously, the gap in time meant that it was quite a big deal for all of us, but most of all, of course, for Martha. A change, a transition, a journey (especially one involving a motorway!) – all Martha’s biggest triggers.
It started well and we made it halfway to the ferry port before things started to go awry. It began with small signs of anxiety. An increase in questions, minor physical agitation and then the seatbelt came off – not ideal when you’re doing 70mph down the motorway. I was sitting in the back beside her and immediately went to put the seatbelt back in. We have a seatbelt safety clip but often the sign of this alone can incense her so we’d avoided using it initially. I tried to put it on, but there was no chance. She quickly lost it and started biting my arms and grabbing for my hair. This behaviour basically continued for the remaining hour of the journey until we finally arrived at the ferry port. The signs of queues and having to wait in the van were aggravating the situation further. The arms I had wrapped around her to hold her as safely in place as I could, had become the focus of her wrath and biting down on them must have provided some relief for her. I, on the other hand, was in agony and my arms were red and swollen with teeth marks.
Luckily, Karl leapt into action and explained our situation to the ferry staff who couldn’t have been more helpful. They arranged a fast track onto the ferry and for a member of staff to accompany us to our cabin. Here, I thought we’d be fine, she would calm down and relax for the 4-hour crossing. I felt a sense of relief wash over me as I handed over a bag of goodies and entertainment to Martha while I headed to the bathroom to run cool water over my poor arms. Alas, it wasn’t meant to be. After mere moments to take breath, she was kicking off again; trying to escape the cabin, throwing herself on the floor, shouting, swearing and kicking the cabin door. I lost count of the number of times she pulled the emergency assistance alarm cord. You would think this might have been avoidable on our part: It wasn’t. More biting over my already swollen arms and what followed was what can only be described as 4 hrs of torture.
Eventually we arrived on the island and to my parents’ house. Martha was mostly ok for the first couple of days. A little anxious and with very little patience but we spent the whole first day on a beach with no other people on it. We did plenty of swimming in the sea (Martha’s absolute favourite thing, much like her Mummy) and let off plenty of steam. We’ve always spent previous trips on the nicest beaches where there are plenty of amenities. However, the problem with that is, that other people go there and the whole thing becomes stressful. We can’t let Martha run free or take our eye off the ball for a moment. This particular day was actually quite relaxing.
My sister joined us, and much to my surprise, swam in the sea with us too. The saltwater was soothing on my very bruised and swollen arms and we all had a great time. The transition home was tricky but not unachievable, and we hoped this was the start of things to come.
Alas, two or so days in, Martha’s anxiety became really heightened. She didn’t want to get dressed (at all). Even the temptation of leaving the house to go to the beach was not cutting the mustard.
We went to visit one my oldest, bestest friends and she would not sit still. My friend, Sarah and I, barely exchanged a few words or a mouthful of coffee before it was time to leave. Martha was becoming restless, physically aggressive and highly agitated.
After a bit of time out, we went for a barbecue at my sister’s house. It was fine for the first hour or so until Martha decided to throw a glass of beer across the room, followed by a bowl of strawberries & cream she’d literally just asked for. It was all too much, and we decided to leave and visit the beach for a walk on the way home to try and regulate her.
Long story short, we decided to keep the next day as low key as possible and abandoned all previously-made plans. We ended up staying at home all day as Martha refused to put on any clothes and continuously attacked me (quite violently). She quickly became too difficult to contain alone and it took both myself and Karl to physically restrain her.
The next day was hell on Earth.
We spent 16 hrs restraining her. We were unable to dress ourselves and were lucky if we had a moment to visit the bathroom or take a mouthful of coffee. The situation became quickly unmanageable and we were all distressed and exhausted.
In the end we had to call the Crisis team on the island. Who in turn had to connect with the CAMHS team in Huddersfield. After a long series of communications and establishing that Martha was recognised to the system, permission was given to treat her. She was prescribed ‘Lorazepam’ (used to treat anxiety, insomnia associated with anxiety, acute panic attacks and convulsions) by the psychiatrist. My sister went to collect these for us and once digested, Martha began to calm down. I’ll be honest, although it was a huge relief, it was also a difficult decision to give such a medication to your child. Although it was a relief to see her calm again, she was also a little ‘out there’. Her pupils were dilated, her spatial awareness was zero and she needed physical support transitioning from one place to another. But she was calm, and seemed happier. For that, we counted our blessings.
The next day however, the first thing she did when she woke up, was attack me. Full scale in the face. She took hold of my hair and pulled so hard that it was coming away by the handful. I couldn’t let go of her for a moment … and so the cycle began again (despite my having already given her another Lorazepam that morning). Karl and I were unable to dress and unable to leave her side for even a moment.
The pivotal moment came when she sank her teeth into my arm and I honestly though she was going to bite straight through it and never stop. I burst into tears as I realised this situation was way out of our control and we needed some serious intervention. I had to call an ambulance.
As it arrived, so did my sister Debbie, who was able to distract and calm Martha. Martha had been naked and the two male paramedics who arrived had requested that if possible she be dressed so they could examiner her. This would have been impossible moments earlier, but the change of face in my sister, and the excitement of the arrival of the paramedics meant that, thankfully, she co-operated.
Along with the paramedics, arrived a police vehicle. Karl ran out to ask them not to come in, concerned that it might aggravate the situation further, and to explain that we were dealing with a 10 year old girl with autism. They were very good and explained that as it was a ‘violent child’ report, it was standard protocol for them to be on hand but they understood the nature of the situation and would sit nearby, out of sight.
Martha was inevitably excited to see the paramedics and with the prospect of a ride in a real ambulance she quickly calmed down and presented as a different child. A short time passed while there was question over whether she needed to be taken in for examination or not. Eventually it was agreed that she should.
We had a lovely trip in the ambulance. The paramedics, (probably questioning why on earth they were even there) gladly showed her how all the life-saving apparatus worked. She chatted away, and you wouldn’t have believed this was the same child that was uncontrollable only moments earlier.
We arrived at hospital where she underwent a series of observations by a nurse, all of which appeared to be ‘normal’. The ward doctor came by and asked us what ‘appeared to be the problem’? When we explained what had happened, he responded with ‘Well, she seems ok now’ in what can only be described as a rather dismissive manner, immediately making us feel as though we’d been over-dramatic in our decision to call an ambulance.
As time went on, Martha was becoming more agitated and unsettled. Her patience of waiting around was wearing thin and we were starting to anticipate an ‘episode’. Luckily at this point, the psychiatrist and crisis team manager came round to see us and took us off to a private room for a chat. Almost immediately after arriving in the room, Martha put on her best show. It was both bloody horrifying and hugely relieving. Just as we were starting to lose faith that anyone would take us seriously, finally a group of professionals witnessed, first-hand, what we had been experiencing.
She began hitting, kicking, biting and spitting uncontrollably in what was described in the report as an ‘apsychotic episode’. She unplugged and threw equipment at us and launched across the room shouting and swearing repeatedly. The tears came streaming down my face. Part emotional exhaustion, part relief, as the lady from the crisis team looked at me empathetically. She asked why nothing had been done about this before and what was happening with her treatment plan at home? She went on to write a thorough report of what she had seen, which was in turn, shared with Martha’s team at home. The psychiatrist prescribed a course of Risperidone and Promethazine (to help with sleep and as a sedative for travel to help us get home safely). Luckily, these helped us get through the last few days of the holiday and kept things on a slightly more even keel, as well as enabling us to travel home safely.
An urgent review was held on our return and it was agreed that medication should not only be continued, but increased, and that Martha’s case should be escalated for immediate review across the board to investigate why things had gone so wrong and something hadn’t been done sooner. As part of this, Martha was put on the ‘at risk’ register. This means she’s known to the ‘services’ as an ‘at risk’ young person so they know who she is and understand the nature of her needs. Also, recognition that she’s at higher risk than most, of having a similar episode or violent incident in future.
When presented with such prospects, it can be daunting and frightening. You wonder all the time if your parenting skills are in question, or if your child could be taken away from you at any point. There’s so much to process. Questioning yourself as to whether you are able to cope with looking after your own child properly. Are you doing the best by them? By your other child/ren? By your partner and your family? It’s a lot.
Unfortunately, a week later, while Martha was still adjusting to the new medication, she attacked me while I was driving the car. She attacked her sister too, who was in the passenger seat, and I had to navigate pulling over on a busy road while she had hold of my hair from the back of the car. We were roadside for over an hour while I got in the back of the car to try and keep Martha calm. This proved futile and she attacked me. We couldn’t go anywhere safely and no-one we knew was nearby. Both Karl, and the girls’ dad, were an hour away. We didn’t want to panic them and potentially cause further distress. Elke was too upset to call the police and so in the end, we called our friend, my business partner Chris, who came out and offered the change of face we needed to alleviate the situation.
Chris managed to calm us all down and drove us home safely. Eventually, Martha’s dad came to get her, while Chris made us a cup of tea and I cooled my arms with icepacks. I still have bruises and scar tissue on my arms from that day 5 months ago.
Since then it has been too dangerous to risk driving Martha in the car, a thing we once loved doing. Another huge limitation placed on our lives and another reason to feel trapped and claustrophobic in our situation. Another choice taken away. Now when we’re at home alone, our only option is to go for walks (which, luckily we both enjoy) but I can’t give Elke lifts to friends’ houses or transport her and her friends to netball training or matches like I used to. Our next step is to work out our options for getting a mobility vehicle which will allow us to put safety measures in place (such as a perspex safety screen) and other aids which will allow me to transport her safely.
She’s settled hugely on her new medication and overall there’s been a vast improvement. She’s still riddled with anxiety and triggered by change and transition, and many of her impulsive behaviours haven’t gone away, but overall we’ve slowly reached a better place.
The last 6 months, have been the most challenging of my life. Probably worse than going through a divorce (which I found pretty harrowing). I’ve battled with my mental and physical health. [I developed severe bruxism as a result of stress and managed to grind my teeth so badly that I pushed all my fillings into my nerves and am now going through months and thousands of pounds of dental work!]. I’ve been on and off anti-depressants, anxiety medications, been going through family therapy, had to make major adjustments to my daily life, and my relationships with the people around me have suffered, along with my work and ability to keep making a living.
So, when I say being a parent is a massive compromise and that it should be given serious thought before leaping in, I suppose this is what I mean. Are you prepared to take on whatever challenges that may throw at you? Are you ready to make life-changing choices (or even have all your choices taken away from you altogether) in order to put someone else first?
Through all of this, I’ve discovered that I am both more patient and less patient than I thought I was, Both more, and less, resilient. I am definitely stronger. And most certainly wiser.
Although parenting has been the most trying and difficult thing I have ever undertaken, it has also been the most rewarding, character-building and my biggest life-lesson by far. I will never be the person I used to be. I will never be able to be the parent I really hoped I would be, or do things in the way I would like; but I am (steadily) learning to live with that. I’m in a much better place right now and on reflection, I reckon I’m prepared to continue the challenge, whether it’s quite as I planned it, or not …… Watch this space!